When Jessica Soares of Beeton, Ont., lost her beloved husband Paulo, affectionately known as ‘Paul,’ he was only 39 years old.
“His battle was 31 months, and that was with two craniotomies, 53 rounds of radiation and 18 months worth of chemotherapy,” she said.
The long and difficult journey started on a typical Sunday afternoon.
“It was sudden. There was no warning prior. We were at home … He looked at me. He was unable to communicate, and I saw him start to drift to one side and I just scooped him up and I got him onto the couch and then we had to do an emergency run to Royal Victoria Hospital in Barrie,” recalled Soares.
She was shocked to learn there was a “nine centimeter mass on his left frontal lobe” and it was determined Paul had brain cancer.
That would be the first of several shocks.
“He wasn’t working because he was recovering. I was with him, self-employed, no benefits. And we found out that his chemotherapy wasn’t covered,” she said.
As his caregiver, Soares shared little of her battle to access critical life prolonging treatment for Paul with him. She wanted him to focus on getting well while she petitioned his insurance to help cover the cost of the drug.
“At one point I actually listed our home to cover treatment for him … in that moment, I would have done anything to prolong his life … We had our whole life ahead of us, so to me, the house didn’t mean anything. He meant everything,” she said.
While Soares succeeded in accessing coverage for the drug “through a special benefit” for Paul, she was stunned to learn chemotherapy was not widely available through provincial coverage.
“His first 30 days of treatment would have been $20,000. And then every month after that, it would have been anywhere between $2,500 and $3,000 for maintenance chemo, which is only five days out of a 28-day cycle,” she explained.
“The outlook in the case of a glioblastoma is 15 to 18 months … and we want patients to be able to live that time in relative quality of life and they cannot if they’re not being treated,” said Marc Peeters, director of Brain Cancer Canada.
Peeters and Soares, who now serves as an ambassador for the national charity, are calling for an equitable approach to brain cancer treatment in Canada.
“Chemotherapy currently isn’t equitably accessible across Canada for patients. It depends on where you are, in which province, whether you have access or not, whether you have coverage,” said Peeters.
Brain Cancer Canada conducted a survey and found the drug Temozolomide is not universally covered by the provincial system “in Ontario and Nova Scotia and Newfoundland and Labrador and in Prince Edward Island.”
“So that means that in those provinces, patients have to rely on if they have private insurance; they may or may not get full coverage through the private insurance. If they don’t have access to private insurance, if they’re not covered through there, then they rely on the gratuity of some pharmaceutical programs that might subsidize it for them,” added Peeters.
Not accessing the drug at all means losing precious time, while paying out of pocket would mean financial ruin for some Canadians.
“The treatment is so expensive. We’re talking about tens of thousands of dollars, and that’s impossible for most people to pay out of pocket and deal with without any consequence,” he said.
Since her husband’s death, Soares is now dedicated to helping open the dialogue on the need for provincial funding for oral chemotherapy used to manage brain cancers.
“It started off as a way to honor his memory of always wanting to leave things better than he found it. And through that, and through the grief cycle, I found some purpose and some direction,” said Soares, adding, “I want to change this for someone else. I can’t change what happened to us. But if I can make it a little bit easier for someone else, then that’s what I’m going to do.”